Today is the The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. On June 14, 2012, my four siblings and I crowded around my father’s bed to say our final goodbyes. Ronald Paul Geguzys Sr. has been missed in so many ways since then, most especially by his children who never really got the chance to share him with our children. Dad passed away of Alzheimer’s just after his 73rd birthday. He left behind a wife, five kids, 11 grandchildren and many people who had the privilege of calling him a friend. He spent the bulk of his career at GE, growing steadily to CEO of the Ballast Division.

He knew how to work hard and play hard. He was an avid sailor and loved all water sports. He taught us to ski practically from birth! He gave the best hugs and hearing his voice meant all was right in the world. His smile and laughter were infectious. I cannot remember a time growing up when he didn’t know the answer to a question, or at least have the ability to figure it out quickly.

Dad could build anything from scratch, including a car and his homes. Even with such “dad-like” hobbies he was the most gentle nurse when he had to care for my brother and I after we were severely injured in accidents just weeks apart.

He wasn’t perfect. He could be brutally honest, infuriating and inflexible. To know him, though, was to love him. Watching him forget little things was hard, but knowing he had no idea who his kids were was brutal. His death blew a hole in relationships that were built over a lifetime. Watching him suffer was more than we could bear.

It has taken a few years for the pain of his passing to settle enough to push through and do something in his honor. Now, the time is right to honor his memory and join the fight against Alzheimer’s during The Longest Day. This year during the summer solstice we will raise funds and awareness for the Alzheimer’s Association by “Lighting The Park” to honor my dad and others who have been affected by this disease.

Tonight, as the sun sets on The Longest Day, we are meeting downtown in the park. Each person gathered will have a unique hand-blown glassybaby votive with a tea light inside. We will come together and make a statement by lighting our candles together and basking in each light’s glow. By joining as a group to remember and support those we love with Alzheimer’s, we will send a powerful message that we are stronger in numbers.

Growing up, my parents always taught us that together my siblings and I were a fist, as there were five of us, and alone we were just digits. I would like to think the same rule applies to fighting Alzheimer’s. Together we can make a difference. Together we can raise awareness and funds to research a way to finally eradicate this disease so no one has to fight this awful fight.

About the Author: Vicki Fredman is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research.

My sister Rose first got in touch with the Alzheimer’s Association about three years ago on behalf of our mother. Since then, and the organization and local chapter has helped my family in so many ways. Today we give back by once again participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers.

Years ago, when Rose and I first talked about how we could raise money for the cause, we decided to organize a motorcycle “poker run.” We ride our motorcycles to specific checkpoints and draw a playing card at each one, the object being to have the best poker hand at the end of the run.

This afternoon is our third annual The Longest Day Poker Run. There are about a dozen Harley Davidsons in our family, and with all the friends we have with Harleys, we knew this would be a popular event. In fact, I feel like it has become a family tradition! It’s just one small way to give back to the Association for what it has done for us.

I’m so proud to participate in The Longest Day. I knew we had to do something for mom and the millions affected by Alzheimer’s, and when you plan and host an event such like this, you really see the people out there who have been affected by this terrible disease. You run into a lot of people who pour their heart out about their connection to the cause. I met a bar owner who cried on my shoulder; he could relate to our fight and he was in a position where he could help us. He advertised about our event in his bar, brought in a live band and was very giving.

As a captain of my team, the day-of is constantly on your mind…is it gonna work, is it gonna happen? And somehow, it does, through the help of many friends, families and local businesses. Last year we exceeded our goal, and we are well on our way to do the same this year. Today we’ve even gotten the kids involved with an obstacle course at a local park. Anyone of any age can help put an end to Alzheimer’s, and today we join together in different ways to draw attention to the cause.

We lost our beloved mother to dementia last September. Our longest days were the last few months with her, which were really painful for everyone. It seems like those months lasted forever. We don’t want anyone else to go through that pain, and that is why we raise funds and awareness today. This is a fatal illness that no one should take lightly. It can affect anyone. Together we can change its course; today, on The Longest Day, fight for your family and for your memories. Fight by joining together.

About the Author: Together with his family and friends, Randy Ceja is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. You can visit Randy’s page here.

Alzheimer’s disease is fast becoming a global epidemic. Every 66 seconds, someone in America develops the disease. We need to end Alzheimer’s – hopefully for our sakes – but also for the futures of our children and grandchildren.

This is my fifth year participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. While I participate in the event in memory of my father, as well as my brother – who passed away with this disease just four weeks ago – I also do so in support of all of those battling Alzheimer’s, and their caregivers. I have now twice seen how devastating this disease can be, and the emotional toll it takes on a family.

My father Henry was an incredibly interesting and talented individual. Over the years, he owned and operated an amusement and concession business, bought a corner grocery store and operated Winkel’s Accounting and Tax Service. My dad truly was my first role model.

My brother Wayne and his loving wife had seven incredible children, eighteen grandchildren and eight great-grandchildren. He was my second role model and, while I miss him very much, I take solace in knowing that he is now in a much better place, and will not have to endure the worst of the terrible disease that is Alzheimer’s.

Today I am privileged to captain the Association’s National Board Team on The Longest Day. We have established a very ambitious goal of raising $150,000 – and I am very confident we will accomplish our goal!

From sunrise to sunset, my team and I will do everything from biking and walking to dancing, cooking, swimming and fishing; one of my fellow board members also will be hosting a radio call-in show as part of this team effort. We will all join together in our different ways for one cause, and we will raise awareness every step of the way.

I wish all of you good luck with your Longest Day activities today and thank you from the bottom of my heart for participating in this critically important event to raise awareness and resources for the millions of people living with this disease. Together we can ensure that our families will one day live in a world without Alzheimer’s.

About the Author: TomWinkel currently serves on the National Board of Directors of the Alzheimer’s Association in Chicago where he also serves as Treasurer and Chairman of the Finance Committee. He previously served on the Board of the Alzheimer’s Association Southeastern Wisconsin Chapter in Milwaukee. Tom is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Tom Winkel lives in the Milwaukee, WI area. You can view his page here.

Today I’m honoring LuAnne and the 47 million people around the world who are living with Alzheimer’s by participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers.

How can I tell you about my wife LuAnne? In the simplest words, she is the love of my life and my bride since the age of 19. But words escaped me when, at 55, LuAnne was diagnosed with younger-onset Alzheimer’s disease.I still love being with LuAnne, but because of Alzheimer’s, she can no longer tell me what she sees, what she feels or what she wants. And while conversation eludes us, on The Longest Day I will use words in another way. From sunrise to sunset, I will write poetry in honor of LuAnne, and share my work publicly on a blog I created just for the event. Why poetry? Because, in the words of poet and philosopher David Whyte, poetry is “a language against which we have no defenses.” It’s a way I can speak of LuAnne that encapsulates everything I’m feeling — from my continuing love for her to my deep sadness about this devastating disease.

Writing poetry was unexpected. As LuAnne’s condition worsened, I didn’t know how to describe my intense emotions, and I needed to find a new way to articulate the impact Alzheimer’s was having on our lives. I participated in an online course about caring for a person with Alzheimer’s, which focused on ways to reduce stress and agitation for those living with the disease.What I also learned that is just as important, and what I would advise any other caregivers, is to figure out what you can do to reduce your stress and be a better spouse, partner, friend, and caregiver. Poetry was an answer for me. Once I started, poetry quickly became my go-to language to express my feelings about our battle with Alzheimer’s.

Today friends and family will find me writing at home and places nearby that are special to LuAnne and me. I may struggle to find the “right” words as I reflect on the emotions that come with being LuAnne’s caregiver, but I know my fight will be nothing compared to LuAnne’s battle with Alzheimer’s. I will not let Alzheimer’s have the final word – those words belong to me, and to LuAnne, and our love story.

(from ‘Prairie Dance’, a poem by Brad Anderson)

I walk amidst her memory

Through the tallgrass and the dreams

I dream upon the hilltop

Of her spirit and her dance

It feels empowering to be able to honor LuAnne through the written word today, The Longest Day.

About the Author: Brad Anderson wants to show those facing Alzheimer’s disease that they are not alone in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Click here to visit Brad’s The Longest Day page.

Today, on The Longest Day, my husband and I will wake up early to hike Mount Evans in Colorado with our team of friends, the Mile High Memory Club. It’s our third year participating in The Longest Day, a sunrise-to-sunset event that symbolizes the challenging journey of those living with the disease and their caregivers. This will be our second year hiking a Colorado 14’er (elevation: 14,265’) to honor someone we love very much who is living with Alzheimer’s – my mother.

Mom was diagnosed with Alzheimer’s a few years ago, but she has been silently suffering for much longer than that. If you have ever known anyone with Alzheimer’s, then you know what a cruel disease this is. Once diagnosed, the person knows their fate, and my mom has already seen firsthand what this disease does. Her mother – my grandmother – also had Alzheimer’s. Because of this, for years prior to her diagnosis, my mother knew what was happening to her and knew what was coming. It was, no doubt, terrifying for her. Over time, she was going to lose the one thing she had spent her whole life creating – her memories.

The reality of what is happening to my mom – and therefore, to our family – has been unfolding for quite some time. Over the years, my mom spent much of her time trying to hide her disease. Unfortunately, there is no way for her to hide it anymore. The disease is progressing and it is heartbreaking to watch. My father is her primary caregiver and is doing an amazing job. Although I know he is exhausted, his patience never waivers.

Dad is there for mom today on The Longest Day and will be there for her always. They celebrated their 50th anniversary last year, but sadly, each day my dad loses another piece of the woman he has loved for all of these years – and I lose another piece of my mom. I am taking action today in order to make sure other families don’t have to watch their loved ones disappear in front of them.

We hike in honor of my mom and the 47 million people living with Alzheimer’s worldwide. We also hike for all of the families and caregivers supporting their loved ones. The more awareness we can bring to this disease – and the more funds we can raise for the Alzheimer’s Association – the closer we will come to putting an end to it.

It is a privilege to be a part of The Longest Day. While I cannot turn back time and change what is happening to my mother, I can have a small part in fighting this disease and hopefully living to see a day without Alzheimer’s.

About the Author: Sarah Springer is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 20, 2016, to raise awareness and funds for Alzheimer’s care, support and research. Visit her personal page here.

My graduate school commencement ceremony was fast approaching, and I knew it would be next to impossible for my dad to attend. My dad, who is in his 80s, is living with Alzheimer’s disease.

Just the drive to and from the school would be a challenge for him, so I made arrangements for the assisted living facility to live stream the ceremony. Little did I know, my family had other plans in mind. My mom had asked the assisted living health coordinator if my dad would be able to make it to Emory & Henry and back. She said, “Yes!” and the entire staff was let in on the plan. The big surprise was underway.

The day of graduation I got there early with my mom. We were able to save seats and still have a good view of the stage. As we were counting the seats, I noticed my mom had counted one extra. I asked her why, thinking maybe my cousin might be coming. Mom fought back tears and replied, “Your father.”

After hearing those words I broke down. I was so emotional, because I knew how difficult it was for him to make the trip. My brother Tim would drive him over so he could be there in person. That was the only graduation gift I wanted – for both parents to see me graduate.

When I met my classmates to line up, I broke down again as I shared my good news with them. A few of my friends joined me in shedding tears of happiness.

It wasn’t until I got to my seat that I saw my dad. He was wearing my school colors, including an ‘Emory & Henry Dad’ hat. He asked my mom why I was crying, and she told him I was so happy to see him. During the ceremony, I got up and walked over to him. I squeezed both his hands, smiled at him, gave him a kiss on the cheek and told him I was so glad to see him. His face lit up. I knew he was proud of me for what I had accomplished even if he had no idea what was going on. God planned it perfectly.

Throughout the ceremony he was able to focus on me, his “punkin.” We looked at each other from the rows, smiling, waving, winking and mouthing “I love you.” Those were precious moments I will always treasure.

On the way back to the assisted living my dad was his old self. He even cracked a joke! I was driving, dad was beside me in the passenger seat and my mom was behind me, when dad asked “Where’s mom?” “She is behind us,” I said. He gazed confusedly at the side view mirror, pretending to look for her and said “I don’t see her.” The whole car broke into laughter. I laughed so hard that my body was shaking and no sound was coming out. For two minutes my dad was back. He was his jokester self.

Having him there with me was the perfect surprise and the best graduation gift.

As many of you know, Alzheimer’s is a very heartbreaking disease. But throughout our “Alzheimer’s journey,” there has been light amid the darkness. I have learned to treasure every moment I spend with my dad, to laugh with him and to love him for being him. I thank God for blessing me with an amazing family and for making my graduation day one I will never forget.

Even though my dad doesn’t remember that day, I always will. It was a day of light.

About the Author: Sara Gearheart, 29, is a children’s director from Virginia. For the last five years, she has been the team captain for her Walk to End Alzheimer’s team “The Journey.” Sara is a caregiver for her dad who is living with Alzheimer’s.

TRUTH: Alzheimer’s is more than memory loss.

It is common knowledge that Alzheimer’s robs people of their ability to remember, but other truths about the disease remain unknown. This June, we are debunking harmful misconceptions that keep people from seeking a diagnosis and that reduce access to needed resources and support services. Uncover the truths and take action to help end this disease.

Julia Balson, a slight, red-haired woman with a big smile, English accent and twinkling eyes, now knows that Alzheimer’s disease affects 47 million people worldwide, a growing percentage of which are younger than the age of 65 . She knows this ugly statistic because her beloved husband, Mike was diagnosed at age 58. “But isn’t Alzheimer’s an “older person’s” disease,” I ask her? I know this is what a lot of people think, so I put the question out there. She sighs heavily and tries to steady her vital, yet sad voice, “Unfortunately not,” she finally says.

Mike and Julia Balson, along with thousands of others living with younger-onset Alzheimer’s disease need the world to know that while theirs is a true and lasting love story, the reality of Alzheimer’s isn’t what’s depicted in The Notebook. This disease doesn’t just affect “old people” or the ability to remember at the end of one’s life.

Married for more than 47 years, the Balsons are world travelers who have adapted to many global cultures during their life together. Like many couples, they’ve had children, challenges, joys and regrets. But one thing they never planned for, or ever thought about, was the possibility of Alzheimer’s wreaking havoc on their family.

Mike was a strong, elite athlete who played professional soccer on the international circuit for more than a decade. He played on big teams in the U.K. and, at one point in his playing career, moved his family to South Africa to join a professional team there. The family had to eventually leave due to the overwhelming violence from the Apartheid riots in the area. So, Mike and Julia, no strangers to adversity, felt they could take on any problem that came their way. When Mike started showing signs of mental “fogginess,” they both dismissed it (or denied it, as Julia tells me later) until the symptoms became so apparent one day when Mike filed his paycheck in one of Julia’s cookbooks.

Despite such a difficult diagnosis, they both maintain sunny dispositions and a strong desire to help others in similar situations. I recently had the privilege of speaking with Julia and Mike about their journey with Mike’s diagnosis. Both of them were quick to offer advice about love, acceptance and living with Alzheimer’s disease.

Tell me a little bit about being married for 47 years. How has your partnership helped you face such a devastating disease? Julia: Big factors for us are hard work, accepting the ups and downs, our faith in God, and our hope for advances in research. I think it’s also important to love and respect each other and try to ignore each other’s faults. No one is perfect! We look for ways to serve each other, and put each other’s needs above our own. We definitely try to encourage each other; and we make it a point to laugh a lot. Now we hold the motto that unless a situation is life and death at the moment, we don’t worry about it.Mike: Never give up; it’s so easy to give up when you’re faced with this kind of situation but you just can’t.

Julia, when did you first realize there was something “off” with Mike? How did you respond to this?Julia: Two things stand out. I found a paycheck in a cookbook. This was odd because Mike had always been so on-top of everything. Also, his driving abilities seemed to be declining. Honestly, I panicked at first and then I was definitely in denial. We ended up getting help through the Alzheimer’s Association much later on; looking back, we should’ve reached out earlier, but I was scared and felt helpless and isolated.

Mike, what about you? When did you first start noticing things? What did you notice? Mike: Things just weren’t right, but I couldn’t figure out exactly what wasn’t right. And, I don’t think I could accept it. I kept asking for directions to go to work), and it once took 20 minutes to do a bank deposit which was unusual because I always had a keen mind.

What did you do when you noticed these behaviors? Can you take us through the time you began to notice problems, through getting the diagnosis?Julia: We didn’t do anything at first. Eventually, we realized we needed to get help because Mike was struggling with day-to-day tasks. Initially, Mike was diagnosed with Mild Cognitive Impairment (MCI). We later got the diagnosis of Alzheimer’s disease.

What has been the biggest change to your relationship since the diagnosis? What do you find to be the biggest issues you have to tackle on a daily basis? Julia: I’d say our biggest change has been the role reversal, because I now have to take care of everything that Mike used to do, like all the driving, the financing and household stuff. I also have to help Mike choose clothes (he would sometimes dress awkwardly with clothes in the wrong order, or not seasonally appropriate), make sure he takes his medications properly and make sure he is bathing correctly. I know it upsets Mike that he isn’t able to take care of me like he used to, but I am a pretty strong person and can take care of myself, so I don’t mind that as much.Mike: The lack of driving ability is upsetting and it’s a struggle to remember day-to-day details. It is also upsetting that I can’t take care of Julia like I used to. I have a problem remembering to eat – Julia will leave food prepared for me and I’ll forget about it completely. Also, I’m trying to work on interacting with others.

What helpful adjustments have you made that you can share with other couples living with Alzheimer’s? Julia: A key thing for us is to write everything down – appointments, instructions, reminders, etc. Writing everything down really helps Mike remember to do things. When I was in denial, I didn’t write everything down and that would get frustrating for both of us. Now we keep a calendar on hand with everything written down. I also joined an Alzheimer’s Association support group; I’ve found that spending time with others on the same journey is a great comfort. I take Mike to the Memories in the Making art classes; it’s something he’d never done before but really now enjoys. Another big thing was to accept the changes, to recognize that there is life after the diagnosis even though it’s never going to be the same as it was.

Working with the Alzheimer’s Association, what do you regard to be the most beneficial support services they provide? What would you suggest to a couple who is just receiving a diagnosis?Mike: Their monthly couples support group has been our biggest lifeline. When all this started, Julia was constantly stressed and ill from trying to handle everything on her own.Julia: There is a church service the first Wednesday of every month that has been very important and beneficial for us. To anyone who is just receiving a diagnosis – don’t panic. There are so many resources offered by the Alzheimer’s Association. They can get help by joining a support group; the staff are kind and wonderful, and no one should go through it alone. Also, remember that there is life after an Alzheimer’s diagnosis – it’s different, but there is life.

If you could tell people one thing about life after diagnosis, what would it be?Julia: You should appreciate every day that you have together as a blessing from God and take life one day at a time. No matter how much you love each other – or the person you are caring for – you still get frustrated sometimes. Take time to sit and say “let’s regroup” when you are frustrated or upset with each other.Mike: I would say to remember that caregivers must take time for themselves because life as a caregiver can get challenging and overwhelming.

The Balsons hope that sharing their story will encourage others who may be dealing with similar struggles and fears. Though Alzheimer’s is more than just losing memories, Mike and Julia will be the first to remind you that it doesn’t have to mean losing love.